Tuesday, December 29, 2009

Unbelievably Frustrated

I have to reprise this photo of Chase because it fully expresses my current feelings regarding the world as I know it:

As I mentioned earlier today, I got some frustrating news at Chase's pediatrician appointment earlier today. I know I've mentioned out here that he's occasionally had some blood in his stools, but we determined he had a small fissure (ouch!) that was probably the cause of it. We've been testing his stools weekly just to be sure. Today I took him in for some vaccines (3 shots and 1 oral, a total of SIX vaccines -- sheesh!) and also spoke with his doctor. Apparently since his stool is still testing positive for blood, it's time to try something else. The doctor is taking him off breastmilk and putting him on a special formula, Similac Alimentum Hypoallergenic formula. He's thinking Chase has an allergy to milk protein.

This is so not cool.

If you've been keeping up with us, you'll know we're heading back to MUSC next Tuesday for another swallow study to determine if Chase is able to handle regular consistency milk (we've been having to thicken his breastmilk to keep him from aspirating on it). My hope and prayer for the past 4 weeks has been that we'll get down there and they'll say YIPPEE! he can have regular consistency milk, meaning... I can FINALLY start breastfeeding my baby!!!

Now that we've had this milk allergy thrown at us, the only way I can breastfeed, assuming we get the go-ahead next week, is if I eliminate ALL milk protein, whey, caesin, etc. from my diet. It's insane the amount of foods that contain these ingredients and the huge lifestyle adjustment this would require. Of course I'm willing to do this and more if it means giving my son the very best. I just can't truly wrap my head around all of this right now. I guess we'll know in two weeks if it truly is a milk allergy, and we'll address how we'll handle the situation then. It's one of two options: I change to a milk-protein-free diet, or I give up on my dream of breastfeeding my precious son and give him formula instead.

Although I can't stand the idea of Chase having a milk allergy, I'm more worried that it's not a milk allergy. If it's not, we'll be referred to a GI doctor who will run a bunch of tests to determine what, if anything, is wrong with his digestive system, intestines, etc. I guess the milk allergy would be the lesser of two evils. I just know we've been through so much already and we still have another major surgery in just a few short months... I was hoping for some taste of "normalcy" at least for a little while. I know things could be much worse for us (he IS a hypoplastic heart baby after all), and I feel so horrible for getting so heartbroken and disappointed over all of this. I just want my baby to be healthy, no matter what it means I have to do to make it happen!

Please pray for me as I deal with my worries and disappointments and for Chase as he deals with a potential milk allergy and/or GI problem.


  1. Hey- we've been following your story for some time now and also have a HLHS baby. I've not commented before now, but did want to offer some encouragement and guidance if it helps. Austin also had blood in his stool after his first surgery all way up until his second surgery then it went away. And we actually know more HLHS babies who also had the same problem. In fact most of the babies we know all had this problem. We were sent to a GI doctor and he actually also has a son with a heart defect and watched Austin closely but didn't want to react until after second surgery due to it usually resolving itself afterwards. There is no proven link between the heart defect and bloody stools that any doctor knows of, but its actually more common than not. Please feel free to email us off blog and we'll help any way we can! Even if you'd be interested in our GI doctor's contact info. Just let us know!

    Praying for you guys!!! Chase is adorable and seems to be doing very well! Way to go Chase!


  2. Awww That picture is too adorable. Aly had blood in her stool a few times in between surgeries too. We chalked it up to a possible allergy to Oxycodone but we never really got to the bottom of it. It just went away on it's own. We'll keep our fingers crossed that Chase will be able to get "the good stuff" and everything works out ok.

  3. My DD doesn't have HLHS, but she did (and still does) have anaphylactic allergies to several foods including milk protein, soy protein, eggs, peanuts and tree nuts. Breastfeeding is tough when your baby has multiple food allergies, but I did it, and so can you!! It's the very best thing for your little one and eating steamed meat and veggies and rice is actually super healthy for you, albeit, an adjustment. I hope you live near a Whole Foods or Trader Joe's! It's daunting, but you can do it. There are some great milk-free foods and if your LO can have soy, then there are millions of substitutions you can make. Best of luck and don't give up on breastfeeding - many kids with food allergy need breastfeeding for longer than a year. You're a tough (albeit, dairy-free) cookie and you can do this.

  4. Hi, me again!! I just have to tell you that both of my girls had a milk protein allergy as infants. (One normal heart kid and one HLHS baby?? So go figure) It took about two months to discover this with McCanless (now age 5) and when Mary Clare began showing symptoms at MUSC at only three weeks of age, I insisted on a poop study. Sure enough, the day I requested the study, we began seeing more blood in her poop. They did do a poop study and immediately put her on Nutramigen formula. All symptoms went away and it was like liquid gold. Literally. The stuff is expensive. Both girls switched to regular (well, organic) whole milk at one year, though. (And by the way, I would certainly pay double the liquid gold price to keep my babies tummies comfortable-So WORTH every penny!)

    When I was told I had to donate or throw away all of that stored breast milk, it really broke my heart. I was in tears! I knew though that I was having such a difficult time mentally, physically, emotionally, etc. etc.etc. with life in general that I just couldn't worry about one more thing, so I made the decision to give Mary Clare (and McCanless five years earlier, for that matter) formula.

    I do not regret my decision at all and I encourage you to make your own decision based on what you feel is best for your family. Don't be pressured to go one way or the other.

    Good luck and know that you are a wonderful mom and doing everything you can do for him. He is a rock star because of you!!